by Rev. Jess Harren
Let us start with some honesty. Being disabled in church can be hard and limiting. It can also be a joy-filled community experience. I have felt limits most of my life as I live with a rare genetic condition called Ehlers-Danlos Syndrome (EDS). This syndrome brings fatigue and pain which go up and down on various days. It also causes constant sprains and strains in hypermobile joints and, some days, my legs decide to stop supporting my body at all and my neck decides to stop supporting my head. I have lived in chronic pain since I was 13 years old and have been on crutches at least four times a year since eighth grade.
Because of long covid and two new things that often occur with EDS (postural orthostatic tachycardia syndrome/POTS and mast cell activation syndrome/MCAS), I am currently using supplemental home oxygen and a wheelchair when I leave the house for long distances. I recently received new crutches made for people with EDS that I can use for short distances. It has been a journey, especially in the last two years since having presumed covid in March 2020. I am also allergic to wheat and there are dairy allergies in my family.
Now that you know I am qualified to write on disability in church, here are some things I wish church people would understand. Following each comment are related actions you can take to make things better.
Fourteen things you can do to make church more inclusive:
- When my family makes it to church with our executive dysfunction and my two ankle braces, two knee braces, and two wrist braces, plus an oxygen machine, extra batteries, and a charger, it feels like a minor miracle. Celebrate with me and my family every time we come to church. Leave out the guilt for not coming more often. Be happy we made it at all.
- Mornings are hard. To get to church, I must wake up extra early to get all my medications and braces on board before I can even think of leaving the house. Some days I just cannot. Sometimes pastors say they are frustrated that their homebound members who request home communion are rarely at home. However, making it somewhere later in the day is a whole different thing because of how long it takes my body to start moving and working. Trust people when they say getting to church in the morning is hard, even if they are often out later in the day. Bring them communion if they ask for it. Believe what people tell you about their bodies without judgment or assumptions.
- Those who cannot walk sometimes have a tough time when people talk of “walking with Jesus.” Use the phrase “moving with Jesus” or “moving with our siblings in Christ” or our “Christian journey.” Use the phrase “showing up for others” or “showing up for justice” in place of “standing with” people or “standing up” for issues.
- People with disabilities and/or Neurodivergent people might not want to be cured. How one preaches on Bible stories matters. Jesus is unlikely to cure my DNA. However, Jesus brings me great healing. Learn the difference between healing and cure. Preach about how healing in the Bible might have included a physical cure but was mostly about restoration to community and breaking down barriers. Consider asking a disabled person to preach (and pay them) whenever healing texts come up.
- For Neurodivergent people, things like sitting still, paying attention, bright lights, and loud music might be difficult to handle. There might be some days people can manage it and some days they cannot. If someone asks to have the music turned down, do it. Provide a quieter, darker space in a corner of the sanctuary. Provide a little tent with a bean bag chair. Keep your thoughts to yourself if someone is wearing sunglasses or hearing protection in church. Provide a sensory swing or personal workout trampoline. Have a quiet room, like the library, where sound and video can come in and Autistic people or those with PTSD or social anxiety can go to re-regulate themselves. Have a small group go through your worship from entering the front door to leaving and record every sensory input they experience on a Sunday. Include every sound, sight, touch, taste, smell, and physical input you experience. Learn from that and provide options. For example, can there be a darker place in the sanctuary? Can things be hung that dampen echoes in fellowship halls? How many textures of seating do you offer?
- There are many reasons some people do not like to be touched. For some it causes pain, for some it increases anxiety, for some it brings up traumatic memories, for some it leads to being on sensory overload. Please understand that even if you are a “hugging church,” consent matters. My reality is that some days I can be touched and some days I cannot. I normally love to hug but on my high pain days I do not. Just because I consent to a hug one week does not mean I will do it the next. During the sharing of the peace when I am the pastor, I say “In a moment we will share the peace with each other. Please do this with respect for consent and always ask before giving a handshake or hug. If someone waves at you, please wave back.”
- Even though I am in a wheelchair, I can walk short distances before my legs are too tired to work. Let people tell you what they can and cannot do and BELIEVE them. Many people with disabilities and sensory issues have days they can tolerate and do more and days they can do less. If you think about it, this is true for you if you are able bodied, too. Some days you have more patience than others and some days you are more tired than others. Those daily fluctuations are intensified for those with both visible and invisible disabilities. If I walk too far or too long, I will fall and injure myself or pass out. If you see me walk a few steps, it does not mean I do not need my wheelchair.
- My wheelchair is part of my body, and it is frustrating or harmful when people move or push my wheelchair without asking first. It feels the same as if you had shoved me or stolen my legs from my body. This is also true in some ways for a cane Blind folks use and their guide dogs. Ask for consent to touch my wheelchair. You can ask if I want help if you always respect my “no.” Most days and times, I can move my wheelchair just fine all by myself. Occasionally, I might like some help if someone asks me first. If I slide from my wheelchair into a pew, do not move my wheelchair away from me without asking and only ask if I am blocking a fire exit. Even then, in case of fire, I am getting back into my wheelchair to evacuate. Keep your hands to yourself around canes for mobility or blindness and to yourself around a Blind person’s body. Always ask if someone needs help first as they may be perfectly able to navigate on their own. Check your assumptions.
- Recognize that many people do stand in church. I have been to too many church services lately where the designated spot for wheelchairs is at the back of the room and I cannot see anything at all but people’s backsides when the rest of the congregation is standing. You probably have a cute backside, but I would also like to see the musicians or the altar. Go sit in the place you designate for wheelchairs for a worship service. Try it for yourself and see your sightlines. Adjust as necessary. We need able-bodied people to do this for us. Try it out and then adjust.
- Saying things like “Stand if you are able” or “Rise in body or spirit” are hard for me to hear. First, if I choose to sit, it announces that I am not “able” that day and then people ask questions or say things like “You’re too young to need to sit.” Second, my wheelchair has given me so much freedom, I do not need standing to be of high value. My spirit can connect to God without rising just fine. God can come to me in my chair and sometimes I even dream that I will still be in my wheelchair in heaven. I say and write in the bulletin “Please be comfortable for praying; many people stand” or “Please be comfortable for hearing God’s Holy Word; many people sit.” I added the many people part because it is more welcoming to visitors to be told what most people are going to do. It gives everyone more choices. Maybe you have low back pain and need to stand while the readings are read. Maybe you put yourself in pain in church all the time and just need permission to be comfortable. Also, if you do not already have captions on your videos, hearing loops, a quality sound system, large print bulletins, and an ASL interpreter for some services, think about getting those, too. There is a Braille version of the ELW you can offer, as well as Braille room signs for conference rooms and bathrooms. You can also include image descriptions in your online communications.
- Being in pain for my entire life is quite different from being in pain once people are older. Being told that “if I can stand at 80 with sore joints, so can you” is heartbreaking. I cannot look forward to dying in the next 20 years and I still must care for my child after church. More importantly, your pain matters, too. Maybe I can give you permission to care for your own body and to help church be a less painful experience. If you have a church book club, read books written by people with disabilities. If you have folks who have worked hard on undoing their own ableism and are in the disability activist community, ask them to speak. Offer a workshop on unlearning ableism run by a person with a disability. Learn more about the lives of others.
- Communion is often inaccessible. Make all your communion bread free of the eight major allergens (wheat, milk, eggs, fish, shellfish, tree nuts, peanuts, and soybeans). It is amazing to be fully included in the community in this way. Or, if using individual communion sets (thanks! covid), make sure you have some grape juice and gluten free ones as well. If you have a separate distribution spot for the allergen-free elements, get the wheelchair you probably keep in your church and go from the wheelchair spot to the communion spot. What barriers are in your way? You can use a rolling office chair in a pinch. (Also do this for bathrooms; so often the trash can is in a place that makes getting through the door impossible.)
- I wish you would take the time and energy to learn more about people with disabilities. (For example, did you know that some communities prefer person-first language and some identity-first language? Do you know what the people in your community prefer?) Read stories, follow blogs, follow on social media, and listen to podcasts by people with disabilities. EDS TikTok is amazing, for example. Be sure to include those with mobility issues, Deaf people, and people who are Blind. Follow Autistic people and learn from them (autism is not considered a disability by many Autistic people.)
- You can do this! Although helping your church be a welcoming place for people with disabilities can be challenging work, it can also be rewarding. You are learning to love your neighbor as yourself; this is what Jesus asks us to do. You can do this. I know this might seem overwhelming, especially if you have not thought about it before or are not close to someone who is open about their disabilities. (I guarantee you know disabled people. They might have invisible disabilities, they might never talk about them, or they might have determined not to talk to you about them based on the language you use.) You are not expected to do everything on this list. Not everything can be for everyone for all time. If you are in a 100-year-old church building with one hundred stairs, unless you are sitting on millions of dollars, I do not expect you to make your church accessible for me. (Elevators and bathroom remodels are expensive.) It is okay if you do not have the resources to do all of these things. Pick 2-3 things you can do in your congregation. Many of you can read a book or fill your social media feeds with authors and creators who are Autistic or disabled. There are small everyday changes that each of us can do to help the church and the world be a less ableist place and more welcoming for all of us.
Thank you for caring and for learning to love your neighbor as yourself.
Rev. Jess Harren is currently the volunteer pastor of Open Heart faith gathering that meets online twice a month, an independent church mostly full of queer disabled folks. She lives with many of her own disabilities and her neurodivergent family. She organizes as an online volunteer with Northwest Suburban Peace Affiliation in the suburbs of Chicago, IL, and occasionally, as her health allows, works on her website at http://pastorjess.com. Most of her time is spent in her rocking chair, reading, going to doctors, doing physical therapy, and playing Minecraft and Roblox with her child.